TSW: One month down!

This past Monday officially marked Lucy being 1 month steroid-free and I was going to write a post, but strep happened, and then catching-up-after-2-days-off-at-work happened.  So here we are, 1 month and 5 days off steroids.
The week before Lucy went through her worst flare (and I know more is coming).  We've cut down on her baths (hello water bill!) and instead have gone back to doing wet-wraps.  Obviously we don't put the steroid cream on her when we wrap her up but we do put on Bee Magic.  Lucy likes being wrapped up, despite her protests when I take out the towel and water-proof pad.  Even though we're doing the wet wraps twice a day and lathering her up with heavy duty moisturizers and vaseline, her skin is still dry and leather-like.  I'm pretty sure this is just all part of the process; many people on the ITSAN forum complain about having "elephant" skin in different places and I see that on Lucy too.  The skin around her butt is thick, droopy, and just plain weird.  Sorry to be graphic but it's kinda hard to describe otherwise.
For the most part Lucy is still sleeping well.  She now wakes during the night more frequently than she used to but she goes back to sleep pretty quickly.  And she might not even be waking all the way up- just enough to let out a few whines and then she's back down.
I think I wrote in my last post how Lucy had tested positive for MRSA.  I just went back and checked- I did not write that.  Long story short- back in Aug. they swabbed her scalp and 2 weeks later called me and told me it was positive for MRSA, which is just infection that is resistant to normal treatment (from what I understand). We did the round of antibiotics for it and on the last day, I noticed her fingernail looked infected.  At first I thought it was fungal but when I took her in, the pediatrician said it wasn't.  She was really surprised she got an infection while on antibiotics.  So we got a new prescription and today will be her last day of that.  I'm sure she will lose the fingernail- she's already lost half of it because it was hanging off her finger so I clipped it down.  I was worried the infection wasn't getting better for a few days because her finger looked so bad but now it's looking better.  It's hard to tell if I should keep it covered, or let it air out (anyone know?)
While this has been a difficult first month, there have been some great blessings along the way.  I mean the fact that when our dermatologist scheduled an appointment for us at Lurie Children's Hospital and it just happens to be the Monday after I'll be up in the suburbs anyway is pretty great.  Also, my best friend generously sent us 3 tubs of Bee Magic so now we don't have to be as stingy with the application.  And another friend who sells Norwex, gave us a Norwex body towel which really helps remove dead skin.  Another blessing was when I was looking for an air purifier for Lucy's room, a friend said she had one in her garage that I could have for $5 and it's just the size we needed.  Lastly, our daycare provider has been a huge blessing for us this year- she has been so patient with us and Lucy so far.  She has been very supportive of our decision to end the steroids and she never acts like Lucy is a burden, even though I know she can be difficult sometimes.
And I know we have so many people praying for her too; I appreciate that so much.  I might write an update after we see the pediatric derm. but otherwise I'll wait until we're done with 2 months.

TSW is exhausting for everyone

TSW Week 3

I'm not really sure what changes there have been in Lucy's skin.  She continues to go through the cycle of really dry skin, massive shedding, healthyish skin, then drying out again, repeat.  Our daycare provider did note that this week she seemed happier.  I think I can agree with that although this past week was crazy for us in general so I feel like I barely even saw the girls.
I do think Lucy is losing weight.  I haven't confirmed this by weighing her but in general she doesn't look as "plump" as she has been.  In particular, her cute little pot belly is starting to disappear.  Her appetite definitely fluctuates, which I know is totally normal for toddlers anyway.  Some days she seems to be reeaally hungry and other days she doesn't want anything.  Of course those days are harder because her diet is so limited and I can't help but wonder, would she eat more if we were able to offer her the foods she used to love eating?  I've thought about mixing protein into her soy milk but we don't have any that doesn't have milk or wheat ingredients. 
Sleep-wise Lucy is still doing great.  Last night she woke up a few times but I think she quickly went back to sleep. 
Right now our daily moisturizing regimen is morning bath followed by Curel Intensive Moisture and either vaseline or the dollar store coconut oil mixture.  Before her nap, she gets coated in Curel again.  At night she gets another bath and then we use the Bee Magic followed with more vaseline or dollar store stuff.  She hates getting rubbed down and tells us to "get out of here" or "let go"  I know some people just skip all moisturizers but her skin is so dry, I feel we need to keep doing something.
Oh and she has almost completely regressed on the potty training.  If she's in the bathtub she will ask to sit on the potty if she needs to.  And when she needs to poop, she'll tell us.  But she wants to wear a diaper every day now and she doesn't tell us when she needs to pee; she just goes in her diaper.  I think we'll just end up retraining her on Christmas break.
I think our biggest concern at this point is just making sure she's eating enough calories to help her body fight whatever is going on.  I'm just praying she doesn't lose any more weight (if she has lost any).

Taken 8.29.13

This was a "good" day for her- still pink but skin was pretty smooth

TSW: Week 2

This last week we stopped the Protopic completely.  We had put some on Lucy last Sunday morning and I didn't apply any on Sunday night because her skin looked pretty good.  We didn't do any on Monday either for the same reason.  And we just kinda decided that maybe she didn't need it anymore.  Lucy's skin seems to be cycling.  And I know this is common in TSW but from what I've read, other people seem to have a longer cycle maybe?  With Lucy, her skin will be suuuuper dry and flaky.  Her skin will feel like very thin paper.  It's like this for a day or two, then she'll go through this massive skin shed (seriously, her car seat is pretty gross) and the skin underneath will feel smoother and healthier.  And then it starts all over again.  So on Friday her skin felt almost supple even, but I noticed on Saturday it felt a little bit drier and then this morning it felt even more dry.  And this morning I could see the backs of her knees starting to get dark red lines so I'm sure they will be cracking soon.
We've still been using a variety of things.  In the morning we've been putting on moisturizer; we were using the Curel but we ran out so right now we're using the Aveeno oatmeal and ceramide formula (it's okay; not as nice as the Curel ceramide treatment).  Then over that we've been using the stuff I found at Dollar General that has the petrolatum, coconut oil, etc.  Usually before her nap, she gets lathered up again in some sort of moisturizer or Aquaphor.  Then after her evening bath, we use the Medicine Mama's Bee Magic and coat that with either Vaseline or the Dollar General stuff.  I do use the Bee Magic on her face twice a day because I feel it moisturizes really well.  If it wasn't so expensive I'd be putting it on her all the time!
We did find out earlier this week that the culture her dermatologist did on her scalp at the end of July came back positive for MRSA.  That sounds scary right?  It's just bacteria that is resistant to common antibiotics.  So she's on an oral antibiotic right now.  I don't really know about this since her scalp has been looking so much better and there is definitely not as much open or oozing skin as there was.  So I don't know if the MRSA was already gone by the time they called us??  I don't really know how all that works so we're doing the antibiotics just in case.
Lucy is still sleeping so well.  I really feel so blessed for that.  I know she itches in her sleep a little bit because her hair is always messed up and the sleeves of her PJs are always pushed up in the morning but I also know she's not scratching the whole night.  I think she must do it when she's in the lighter stages of sleep.
Her gluten/dairy free diet is still going pretty well.  Although I guess she kind of "cheated" twice this week.  One night, she and Taylor were eating dinner at their play table and Taylor got up to use the restroom.  Well Lucy decided to help herself to some of Taylor's chicken nuggets which of course have wheat.  And then yesterday Lucy came to school with me and I thought I had brought plenty of snacks for her (box of raisins, 2 pouches fruit snacks, and 1 mashed fruit/veggie pouch) but even after eating all that Lucy informed me she was very very hungry and all I had was a package of Goldfish crackers.  I don't think she was really bothered by it but today she did have some very loose poop so maybe it just affected her tummy and not her skin.
I guess I'm still just waiting for it to get worse.  So far, everything seems to be going well despite Lucy being so itchy.  She's not even as itchy as she was the first few days.  I don't know if her addiction is just not as bad as other people's or maybe all the things we're doing (baths 2 times a day, multiple moisturizers/skin protectants, and the diet) are just really helping her but I'm very grateful that so far this hasn't been too terrible.  I mean, it hasn't been that much worse than when she was on steroids.
I took this picture yesterday morning; her skin looks pretty good but it actually felt a little dry/rough and as you can see, she's still itchy

Oh and yes, she is wearing a diaper.  I can't remember if I mentioned last week how she has regressed a little with the potty training.  Some days she's done really well telling us every time she has to go (even when wearing a diaper) and other days she just goes.  We always give her a choice of what to wear in the morning and sometimes she picks undies and sometimes she picks diapers.  I'm not too concerned about it; if we have to retrain her in a few months, it won't be a big deal.

TSW- Week One

First, TSW= Topical Steroid Withdrawal.  It's much easier to type TSW ;)

So we've been a steroid-free for one week.  I'm beginning to understand how horrible this process is and will be.
Overall, Lucy's skin has been pretty bad- red from head to toe with some small clear spots on her legs.  The rash she had in her diaper area has definitely gone down.  Her scalp also looks a little better.  Still pretty flaky but what's under the flakes is clear skin.  We try and comb her hair at least twice a day; Walker is better at getting the flakes out than I am.
I'd say the worst symptom right now is the itchiness.  Lucy is almost always scratching, no matter what she's doing.  It is no good telling her to stop, or pulling her hands away from her body.  She is relentless and she gets really mad.  I found some cute toddler gardening gloves that have Disney princesses on them; I thought maybe she wouldn't mind wearing them.  I thought wrong.  Trying to get her to wear them was kinda like when my parents thought it was a good idea to put "boots" on the dog.  Except Missy didn't protest nearly as loudly as Lucy did.
What we've been putting on her skin:
We do use the Protopic sparingly every other day.  Walker and I had to kind of reach a compromise on this as I didn't want to put it on her at all.  I had read on the ITSAN forum that some people flared (as in skin turning red, itchy, oozing, etc) after they stopped using Protopic, compared to before using it.  They said it just stretched out the withdrawal.  But we agreed that we could try it and if we thought she flared really bad after using it, we wouldn't use it again.  I guess since we actually have a supportive dermatologist now we can at least try things he suggests, that way we don't lose that relationship.  It does seem to be helping the appearance of her skin, but will it be like the corticosteroids where she flares immediately after we stop using it for a few days?  We'll find out in another few weeks.
We've also been using a lot of vaseline.  Often TSWers cannot tolerate anything else on their skin.  As you can imagine, this has no effect on the itching and doesn't really moisturize the skin that much.  It basically just forms a protective barrier.  We have put her other moisturizers on at times (like the Curel) but she doesn't seem to like those.  For her diaper rash (not even sure we can call it that since she only wears diapers for sleeping) I used Dr. Smith's Diaper Ointment. I picked it out because I could actually pronounce all the ingredients in it and I knew what all of them were.  I think it worked well.  For her scalp, I found this spray by Shea Moisture called African Black Soap Dandruff and Dry Scalp Elixir.  I found it at Wal-greens.  It actually lists eczema as something it treats on the front of the bottle and like I said her scalp is looking better so I guess it is doing something positive.  And lastly, I ordered some ointment that many TSWers have recommended: Medicine Mama's Sweet Bee Magic.  It is pricey.  I managed to get a deal on it (basically 2 tubs for the price of one) but even still, it's not something we can slather on as much as vaseline.  It is very nice though.  Lucy tolerates it pretty well.  I can't tell if it's helping all that much or if her skin looks a little better because of the protopic.  I like the quality but I might try making it myself- I found a homemade recipe online.  Now I just have to find the ingredients...
 Lucy has been taking lots of baths.  This is quite a change as Lucy used to HATE baths.  Like screaming the entire time, asking to get out of the tub.  Now, she asks for them.  We've been letting her take 2 long baths every day.  Sometimes we'll put in baking soda, colloidal oatmeal, or epsom salts.  We even did an apple cider vinegar bath one day (heard it was good for fighting off bacteria).  She really doesn't care what's in the bath, as long as she's in the tub.  I don't know if the baths are soothing to her or if she only likes them because she has access to all of her skin for scratching.
We do Zyrtec twice a day because supposedly it can help with the itching.  I don't know that it does but we'll keep using it for now.  
Praise God, Lucy still has been sleeping pretty well.   Her naps this week have been around 3 hours (although one day she napped for almost five!!) and at night she's still sleeping anywhere from 10-12 hours.  We've had a few nights where she's gone down and didn't make a peep until morning.  The other nights, she might have trouble getting to sleep but then be fine the rest of the night, or she'll wake up between 10-12 really fussy but somehow we always manage to get her back down.  So far, Walker and I haven't lost much sleep.  I'm praying so hard that continues!  It's hard enough watching her scratch all day and deal with all of her fussiness, but I know it'd be 10 times harder if we weren't getting sleep.

What follows are 2 pictures of Lucy- if looking at crusty or red skin turns your stomach, then don't scroll down.

I think this was taken on August 11th- 3rd day without steroids.  You can see how red she was getting already

This was taken on August 14th, 6th day with no steroids.  Her face is definitely the worst part right now.

I guess the good thing is that her face looked better just a day later.  We've been trying to very gently get the crusties off her face but she really can't tolerate us touching her face right now.
I think the hardest part of this is seeing how this is affecting her spirit already.  She doesn't want to go places anymore.  Most days all she wants to do is sit on the couch and watch TV or play on my iPad.  Or of course, take a bath.  I try to engage her in playing with her toys but she just tells me "no."  I feel like the last 2 days we've seen her mood improve a little bit.  Many teens and adults going through TSW develop depression; I really hope this doesn't have any long-term negative effects on Lucy's emotions.

The A Word

Anyone who has spent even a little time with Taylor notices that she's...quirky.  She's has little oddities that sometimes make me go "hmmm, do all 3 year olds do that?"  I think a lot has to do with her language.  She still doesn't sound like a three-year old.  Well, not a three-year old who will be four in a few months.  I mean this is expected because she hasn't received any speech therapy the last 9 months.  Don't get me wrong, Taylor has definitely improved but she clearly is still very delayed.  But every once in a while, I'd think "well, is it just speech delays?  Is there something else going on?"  And I'm not the only one to have thought this.  Of course it can be hard to tell another person you think there is something wrong with their child.  I mean how do you do that without making the person think you're attacking their parenting? 
I'm digressing....at the prompting of my sister, I started doing some research on autism.  Ugh...even typing that word...please don't misunderstand me.  I know having a kid with autism is not the end of the world, but for whatever reason I've always been SO afraid of having a kid with autism.  I'm not really sure why- it just did.  Geez, digressing again.  Okay so like I said, I started doing some research.  Most of it was done on Autism Speaks' website.  Just reading different things and after filling out the M-CHAT, I decided to go ahead and see a developmental pediatrician. 
We went this past week and met with the developmental ped. at Christie Clinic (FYI, the developmental ped. for Carle Clinic books appointments at least 8 months out).  The appointment went well.  The ped. did some different things with Taylor, some quick assessments of her visual motor skills, her receptive speech.  After the assessments the ped. said the words I was wanting to hear "I wouldn't say she has autism." Phew! BUT, like I suspected there are things going on.  He said she has some hyperactivity (uh yeah, she's a wild-child!) but there was no need for medication yet.  She also has some sensory processing issues, meaning she can get overly stimulated by her environment.  And lastly, while he won't label her as autistic, he is saying she has a "social disability."  Basically, he thinks Taylor has trouble reading nonverbal cues.  We see this too and we have been trying to work on it with her but we're not experts obviously.  He also added that perhaps she struggles with her speech because she is so over-stimulated.  It makes sense but is over-stimulation the sole reason for her delay?  I just don't know enough about the link between the two.
So now our next steps are to give the report to her school and hopefully they can add on to her IEP to provide additional services.  The ped. thinks some occupational therapy would be good for the sensory processing (like deep massage and brushing), and maybe she could get some social work too.
But labels or not, Taylor is still Taylor, quirks and all :)

This Could Be the Beginning of a Very Long Road

Over a month ago, I wrote a little bit about Lucy's eczema and what it's been like dealing with that.  I would love to say that this post is all about how much BETTER she is!  It's not.  Actually she's worse.  Over the weekend she woke up with her eyes swelled shut.  I don't think this was caused by the eczema.  Or maybe it was (maybe she rubbed her eyes too much in her sleep??).  I thought, maybe it's something with her allergies.  The only thing I could think of at the time was we had eaten at a restaurant on Friday night and the girls had some chicken strips and fries.  It's possible they cooked it in peanut oil as I forgot to ask.  However, the swelling didn't go down that much, even after giving her some Benadryl.  The next morning, when she woke up, her eyes were swollen again.  She could open them at least, but just barely.  I took a closer look at her allergy report from when she was one.  The allergen with the highest reading?  dust!  And NO ONE bothered to tell me that when I was called with the report.  Really people?!?  You think you might mention to me that I need to keep my house cleaner?  So we are trying to combat the dust in our house; not an easy task.  I've set a goal to vacuum the girls' room at least twice a week.  I'm also trying to sweep the laminate floors daily.  And I'm sure we will look at getting a hypo-allergenic cover for her mattress and probably an air purifier for her room.  (if anyone is selling either of these things for cheap, let me know!).
But something still isn't right with her eczema.  I didn't understand why we'd use a steroid cream, she'd clear up, but within days of stopping the steroid cream, she'd flare right back up.  And of course the dermatologist and physician's assistant we were seeing, were not very helpful.  I mean, they definitely tried, but I felt like I was told something different at each appointment.  I couldn't keep track of what we should start doing, stop doing, and continue doing.  I think this past weekend, I hit my limit.  Something about all this just didn't feel right.  I did some more reading on NEA's forum and I kept seeing "topical steroid addiction" pop up.  Now I had heard a little about this before and I had even mentioned it to the physician's assistant but he dismissed it so quickly, I thought okay, that's not it.  But over the last few days, I've been reading more.  I found a wonderful blog written by a lady who has gone through with her daughter everything we've been going through with Lucy.  Our stories are practically identical (except Lucy's started way earlier in life).  I read that blog and just cried and cried, identifying with so much.  I found some other blogs with similar stories.  I started to feel that this is what we were up against.  I also read about how reluctant the medical community is to accept this.  How doctor after doctor refuses to acknowledge that some people just can't handle topical steroid creams.  Unfortunately, the only "cure" to this is complete withdrawal.  It is a long, and very painful process.  The lucky ones are "healed" in 9-12 months.  Others (who have been using topical steroids for years) take much longer.  So now I was torn.  Do I put Lucy through this torture in the hopes that in 9-12 months, her skin is clear and she no longer itches incessantly?  Do I just keep slathering steroids on her, knowing that continued daily use has horrible side effects down the road?  It is an awful, awful decision.  And given the fact that there don't seem to be too many doctors out there supporting it....well you can understand my hesitation.
In the meantime, on Monday morning when Lucy woke, her hair looked like a matted bird's nest.  The back neckline of her shirt was soaked and there was a spot on her sheet as well.  Lucy had scratched her scalp so much overnight that almost the whole thing was raw and oozing.  Her scalp had been progressively getting worse this summer and I'm sure you can guess what we were told to put on it: yep, a topical steroid.  Which, at the time we did.  But I wasn't comfortable doing that with the new information I had.  Plus, the skin was oozing; was it even safe to put anything on it?  I called the dermatologist's office again and left a message.  When they called back, they said we needed to come in for another appointment.  Gee, what a shocker.  But this time, we were going to see a different dermatologist.  A dermatologist who has a pediatric certification.  Wait, WHAT?!?!  We've been battling this for 2 years and NO ONE thought "gee, maybe this CHILD should see someone who has a background in this?"  UGH, whatever.  I'm over it now, at least we had an appointment to see someone who maybe was more knowledgeable. 
So we had the appointment today.  I must say, I like this new dermatologist.  He looked at Lucy's allergy report (no one had ever asked me for that before; they just told me it was unreliable and really, allergies don't cause eczema...::eye roll::).  He recommended a wheat and dairy elimination diet.  We had kinda tried those before, but not at the same time and not for very long.  You might think it's incredibly limiting, but Lucy has a limited diet anyway (she's 2 and a picky eater) so we only have to cut a few things out. 
He also said he was going to give us a prescription for a different cream (oh joy) that he thought would be really nice for her.  Inside my head I was thinking "oh gosh, here we go again..."  Finally, I gathered my nerve (preparing myself for the response I was sure was coming) and said "what about steroid cream addiction?"  The doctor said almost immediately, "yeah that's a possibility."  I was quite simply, stunned.  He looked at her arms again and said "this is not typical eczema" and seemed to agree that because of her history with the steroid creams, she most likely was addicted.  He then mentioned a doctor out in California who's been researching this and Walker and I were like, yeah Dr. Rapaport!  I swear, I heard the Hallelujah Chorus in my head!  I couldn't believe this doctor was supporting us in this!  So now we have a prescription that is NOT a steroid that will help with the itching.  We still have the steroid one for her scalp.  We're going to use that for a month.  But we are stopping steroids after that.  It will not be easy.  I'm dreading it.  I know we will probably not get a lot of sleep.  I know Lucy will be pretty miserable.  But I also know it will be worth it.  I know if we can get her off these steroids, we will have so many other ways to combat any eczema that might flare up again.  I'm also feeling hopeful for the diet change.  More and more, it appears that eczema is the body's way of telling you there's something bigger going on.  I don't think it's a coincidence that Lucy's skin started getting really bad when she started eating more and more table food. 
I know I will be praying a lot in the coming months.  I think God has already answered a huge prayer in that we have found a dermatologist who will support our decision to get off steroids.  I'm scared about the coming months.  I have a very good idea of what they could and most likely will be like for us.  I'm praying for a miracle.  I'm praying the itching and burning from the withdrawal will be kept to a minimum.  I'm praying she won't get any staph infections.  I'm just praying that one day Lucy will have beautiful skin and that she can be a normal kid living a normal life.
I'm going to try and do regular posts on her progress.  I also want to take pictures.  They may not be pretty pictures but hopefully over time they will show improvement.
And I think I need to add in here, I'm not saying topical steroids are evil.  They do have their place and they do work for a lot of people.  They just don't seem to work well for us.

The Great Ezcema Battle

If you've known our family for any length of time, you know that we've been battling Eczema with Lucy for two years now.  In that time, we have seen her pediatrician and dermatologist numerous times (in fact, we have seen the physician's assistant at her dermatologist's office 4 times in the last month and a half and we go back again on the 1st).  At her last appointment, the dermatologist told me that "experts" (whoever they may be) say that the quality of life for families dealing with Eczema as severe as Lucy's is comparable to living with a child who has severe autism.  A year ago, I would have called him crazy.  Now, I kinda get what he means.  The past 6 months (the point at which things started getting really bad) have been exhausting.  I've read so many conflicting things, have spent so much money on different lotions, creams, and bath treatments, just trying to find something that works.  I worry constantly about overexposing Lucy to corticosteroids, and if she is becoming immune to their effects, or dependent on them. 

These are all prescriptions we've gotten since the beginning of May.  I kid you not.  Actually, there's one more.  I forgot she has a prescription now for Q-dryl, which I believe is a stronger form of Benedryl for her to take at night.  Thank goodness for health insurance, right?
Unfortunately, health insurance does not cover the cost of OTC moisturizers.  Of course the good ones are pretty expensive.  I am very happy with a new product Curel came out with; we've been using it for the past month and it is definitely the best OTC treatment we've used. 

This is their new Ceramide treatment.  Ceramide is supposed to be really good for your skin because it helps your skin heal itself.  We did use the Cera Ve which I liked too but the Curel kind has petrolatum in it, making it thicker.  I know petrolatum (think Vaseline) is really not that great when you think about what it is, but unfortunately, I have yet to find an "all natural" product that does as good a job.  The other plus to the Curel is it's about $4 cheaper than the Cera Ve and when you're buying at least one tub a month, it helps to try and save a bit of money.  Curel is in no way paying for me to endorse them (maybe I should work on that....) but I highly recommend this product for anyone who is dealing with really dry skin or Eczema. 
Anyway, the past few weeks we've been doing a treatment that I think is working pretty well.  It's called wet-wrapping.  Our dermatologist used it with patients when he interned at the Mayo Clinic.  Basically, we apply Lucy's steroid cream, then her moisturizer and wrap her up in towels that have been soaked in water and then wrung out.  Then she sits like that for 20-30 minutes.  To fully cover her arms, we use some old socks of Walker's.  We do this twice a day.  I'm glad it's summer and she actually has time to sit like that for an hour every day!

Here she is all wrapped up (with a waterproof sheet protector wrapped around her towel so the chair doesn't get soaked).  You can see her face looks pretty bad here (definitely not the worse it's been!) and so I want to ask how we can possibly do the same technique with her face.  I don't know if we'll have to continue the wet wrapping twice a day or if her derm. will want to bump it down to once a day.  I do know we will need to take a break from the steroid soon here.  She's been on a steroid cream for almost the last month straight.  It's really hard when we take her off them.  She immediately flares back up and is just miserable.  She scratches her neck and head in her sleep and her eyes are always puffy from rubbing them so much.  Lucy is such a happy little girl and it breaks my heart on those days when we can't do anything but lather her up in moisturizer and hope that it's enough. 
I've been praying for a long time that Lucy will outgrow this; I know many kids do.  I asked our derm. if he thought she would and all he would say is "it's possible."  He didn't look very hopeful though. 
And some days I get really down about all of this but I try to remind myself that there are others who have it much worse.  I have found incredible support on the National Eczema Association's website.  They have a lot of information and a forum where people share their stories and things that have worked (or didn't work) for them.
I'm not really sure the point of this post; maybe I'm trying to share some information, support for others who are going through this, or maybe I'm just needing to vent a little. 
I don't really know what everything will look like in the future; I guess I'm just hopeful that no matter what, Lucy is happy and that she will have the strength to deal with this no matter how bad it gets.

Potty Training

To be honest, I've been thinking about potty training for at least a year.  I knew we had to get Taylor trained but I kept putting it off.  I wanted to make sure she was "ready" (which I'll say more about this in a minute), I wasn't sure she would do it because of her language delay, but mostly I was afraid of being a failure.  Potty training scared me.  I read so many different blog posts on potty training in a week, potty training in 3 days, and even potty train in 1 day!  Yep, ONE day.  I even had that one pinned on Pinterest (I don't anymore).  Over the past year, we've kinda half-hardheartedly tried with Taylor.  We'd put her in undies, or have her wear her cloth trainers.  She spent much of the last school year in Pull-ups.  Our daycare provider was great in that she would put Taylor on the potty every day.  But, Taylor hardly ever did anything.  I figured she just wasn't ready. 
But as the school year ended, I knew it had to get done.  I was NOT sending her to pre-school in the fall in diapers or Pull-ups.  I knew I could (it's a public program so they don't require kids to be potty trained), but I was tired of the diapers and really, when all of her friends have been potty trained for at least a year, it was a little ridiculous that she wasn't.
We started last Saturday.  I didn't really know what to do other than some things I've picked up from random books, articles, blogs, forums, and friends.  I knew we had to say good-bye to diapers for good.  So I took off her overnight diaper and said "okay Taylor, no more diapers."  And then I let her run around naked the whole day.  About halfway through the day, I knew I needed guidance.  I needed help.  I really didn't know how to do this!  I'd read about an e-book called "Oh Crap.  Potty Training."  It sounded pretty good and it was only $15.  I figured it'd be worth it. 
The first thing I read about was the "readiness" part.  The author, Jamie Glowacki, said not to think of it as "ready," but more as "capable."   Wow, when I thought of it that way, it really hit home.  Taylor has been capable for ummm a long time now.  We had to make this work.
The other thing I really like about Jamie's book is she doesn't give you a time-frame.  Instead of saying, Day 1  you do this and Day 2 you do this, and expect this by Day 3, she gives you blocks.  Four of them to be specific.  And each child moves through the 4 blocks at his/her own pace.  Some kids go through all four in 3-7 days.  Some kids take longer.  When I read that, it was like "whew! pressure off!"  That's what made me so nervous about those 1 and 3 day programs.  What if it didn't work in 1 day or 3 days?  Then I give up?  I would feel like a failure for not getting it done in the time frame the author(s) tell you it should happen. 
I don't want to just make this all about the book though.  I will just say that if you are going to be potty training a kid in the near future (and I wouldn't wait to do it- Jamie recommends between 20 and 30 months) I really really recommend you download her book.  You don't have to use rewards (in fact she discourages rewards because why reward the kid for something they are expected to do) and her tone in the book is very no-nonsense but in a kind, funny way.  Oh, she does use the f word a few times, and maybe some other swear words.  That doesn't bother me, but I felt like I should warn just in case it bothers others.
Anyway, the point of all this (hmmm I really digressed there) is we started on Saturday which would make today Day 8.  I'm not going to lie- the first day was confusing (remember I read Jamie's book kinda late in the day so we didn't really start doing her method until about 3 in the afternoon).  Day 2 was awful.  But I didn't give up; we were NOT going back to diapers.  Day 3 was better.  Day 4 was better than Day 3.  Day 5 was simply fantastic.  Day 6 was more on par with Day 3.  Day 7 was good, and today?  Well today has been pretty great.  I'm not going to go into specifics as to how many times Taylor has gone on the potty because honestly, I think that's annoying when people do that. Especially on Facebook.  Like, you don't share your own bathroom habits on Facebook, so why are you sharing your child's?  Let your child have some dignity (okay stepping off soapbox on that one).
Oh...night training.  Yeah we actually are tackling this now too.  I just figured it'd be easier to get it all out of the way.  So right now, Taylor sleeps on just her mattress (I know it sounds awful but she doesn't seem to mind) and her pillow has plastic bags on it under the pillowcase.  She does have her blanket of course and we have extra ones near her bed in case we have to change it out in the middle of the night.  She's only had 2 nights that were completely dry.  But after last night I think I've nailed down when we need to wake her up to pee so we'll see if I'm right tonight.  What is helping is we really cut down on her fluids in the evening.  At dinner she has a small cup of milk (this gives her practice drinking out of a regular cup as well) and then that's it for the night.  If she's really asking for a drink (like she did last night) we'll give her a tiny amount of water.  This may sound cruel but we try and push the fluids early in the day so that she's not as thirsty at night.  Really, toddlers only need about 1 liter of fluid every day. 
So is Taylor fully potty trained?  Well yeah I'd say for the most part she is.  She is starting to self-initiate her bathroom breaks but if I know it's been awhile I will prompt her.  And when I say prompt I mean "c'mon Taylor it's time to pee," not "do you have to pee?"  I know if I ASK, the answer will always be no.  Naysayers might say "well then Taylor's not trained, you are!"  Um, no.  Taylor knows where her pee and poop needs to go.  That is the point of potty training.  You are not teaching your child HOW to pee and poop; they are experts at that.  They've been doing that since birth!  You are just teaching them a new place for pee and poop to go (another aha! moment from Jamie's book).  So yes, I'm prompting her but you know if you think about it, we're always prompting our kids.  "You need to wash your hands before dinner," "look before you cross the street," "get your homework done before you watch TV," etc.  We will be prompting our kids until they are in college.  And I bet it won't even end there.  So I am boldly saying that Taylor is potty trained. 
And after we go to NC in a few weeks, we get to go through the whole process again with Lucy.  This will be quite the productive summer for us. ;)

Happy 2nd Birthday to Lucy!

Well of course I haven't been keeping up with the blog.  I was waiting until after I got Lucy's 2 year pictures done (which required good weather) but I got those done 2 weeks ago so now I"m out of excuses.  It's okay; I don't think anyone was holding their breath waiting for this post ;)

Weight: 23.6 pounds
Height: 31 inches

Yeah she's a tiny one too but she's still able to wear Taylor's clothes from last year so it is really working out well.  Lucy is slowly losing her little fat rolls.  Her thighs don't have any more creases but she still has a touch of the wrist and ankle rolls.

I think I have the smartest 2 year-old ever but of course I'm biased, lol.  I also may have the sassiest.  We always used to say that Lucy was our well-behaved child.  And in many ways, she still is.  However, in the last 3-4 months she has developed quite an attitude.  For one thing, Lucy does not like sharing us with Taylor.  If Lucy and I are cuddling on the couch, she gets highly offended when I let Taylor come up too.  Lucy definitely follows The Toddler Rules of Possession:


 
 


And she will definitely let you know when you've broken one of the rules by screaming, arching her back, rising on her tiptoes in indignation, or (gently) throwing herself on the floor and then rolling over halfway to make sure you are watching and understand the gravity of the situation.  And while I love Lucy's advanced language skills, it also means she can defy me with more attitude than Taylor can.  Taylor will just flat out ignore me and turn on her selective listening.  Lucy, on the other hand, will tell me "no," "I don't want to," "NOOOOO," or my new favorite "No ma'am!"  Oh two is a fun age.....

Now about her eczema.  I did post the prayer request on Facebook a few weeks ago and I really appreciate everyone who has been thinking of us.  I feel like since then, we have spent almost $100 on "stuff" to try and deal with this.  We renewed her prescription cream but then I decided not to use it because I was worried it was damaging her skin and I didn't want her skin to become dependent.  We bought stuff for baths, new ointments, creams, moisturizers, itch-fighters, and even medicated bandages to wrap around her legs at night.  Oh yeah, and a new humidifier.  All of the new stuff and new routines seemed to be helping somewhat but let me tell you, it is exhausting.  Not just for us, but for Lucy too.  Last weekend we cut wheat out of her diet.  I know it will take a while to really see the effects of that but I think it might be worth it.  We had an appt. scheduled for May 13th but after a particularly bad day on Tuesday, I called and got it moved up to this morning.  This morning we saw someone different.  I certainly liked our former dermatologist but I just felt like we heard the same thing each time and now that these visits are costing us $50 each time, I wanted some answers and I wanted something that would WORK.  So today we saw a new PA and I like him as well.  He told me he wanted to make things simple for us.  He understood my concerns with the steroid cream but we worked out a plan to get Lucy weaned off it once we get things under control.  It will take a few weeks and in the meantime I am supposed to take pictures of her skin every week so he can see her progress (I probably should have asked how I get the pictures to him....).  When I mentioned our co-pay he told me not to make another appointment but that he did want to hear from me in 2-3 weeks to report on how Lucy is doing.  I really don't care if we have to lather up in moisturizer twice a day for the rest of her life; I just want her to stop scratching because I really feel that's what is making everything worse.  She's not sleeping well because she scratches herself in her sleep.  In general Lucy is a happy child and I want her to stay a happy child.  I don't want her to be miserable all the time because her skin is so irritated.  He also wants us to keep using the Zyrtec twice a day.  We were using Claritin but I don't think that was really helping.  I think the Zyrtec is helping as her skin has been looking less red (not completely normal but at least the redness has gone down somewhat).
I'm really nervous about this summer because she will be wearing less clothes and whenever her skin is exposed to the air, she immediately starts scratching it.  It's like she's been waiting allll day to scratch her lower back or her upper thighs because she just goes to town on them at every diaper change.  Ugh.  I'm really praying the new routine works for her and that we'll be able to wean her off the steroid creams. 
Oh let's end with on a happy note some pictures

I know her skin doesn't look that bad in these pictures; let's just say I've gotten pretty good at retouching.

Chocolate Chip Power Breakfast Muffins

Last week, I found this recipe (thank you Anna for pinning it!) and wanted to give it a go.  But when I looked at the recipe closely I knew I had to modify it.  Do you see the second ingredient listed?  All-purpose flour.  BLECH!  Seriously people, I've read about all-purpose flour; it's not good for you.  Now I suppose I could have substituted with whole-wheat flour but that doesn't really help on the carb count and yes I'm one of those crazies who is following a low-carb lifestyle (for the record, it works).  So I immediately googled substituting coconut flour (which is excellent for you by the way).  The thing with coconut flour is you need a lot LESS of it because it soaks up liquid like you wouldn't believe.  I decided to use 1/2 cup and then add in almond milk to make sure the batter didn't get too doughy.  Also at the last minute, I decided to add in 1/4 scoop protein powder.  We use this protein powder at our house; Walker claims it's one of the better protein powders on the market and since he's the diabetic in the house, I believe him.  Do NOT get a protein powder with a lot of added sugar!!  Now, because of this added dry ingredient, and the use of coconut flour, I had to add 1 cup of almond milk to the recipe.  Also, I used plain non-fat greek yogurt; none of that honey added stuff (hello added sugar anyone???)
The other substitution I made was for the blueberries.  If I had planned ahead, I would have made it with the blueberries but it's Sunday morning and we haven't gone to the store yet.  The only suitable thing I had was about 1/2 cup of Ghirardelli 60% Cacao bittersweet baking chips.  Well that's not a hard call to make; chocolate it is!  The baking chips were pretty big so I chopped them up a bit in my mini-food processor. 
Now I don't count calories (it's way too much effort for me and with the way I eat now, I don't need to and I'm still losing weight) but I know some people out there really like to know the nutrition count.  With all of the substitutions/additions I made to this recipe, the approximate nutrition count is this:

Calories: 209
Fat: 12 g  (yes I know but fat doesn't make you fat, sugar does)
Carbs: 17 g
Protein: 9 g
Sugar: 7 g (yee-ha!  that's with chocolate!!)

You might scoff at how many calories there are but remember, I'm using these as a meal (or most of a meal), not a snack or a dessert.   Also, I calculated the nutrition using the exact brands I have so if you make variations you will have to calculate your own nutrition (although I admit, I took a guess on the coconut flour since I just keep that in a snap-lock container).

  

I was really pleased with how they turned out.  I was worried that they'd be really dense but they're not too bad.  I highly recommend eating these slightly warmed- the chocolate is all melty and gooey which is perfect.

Chocolate Chip Power Breakfast Muffins

Ingredients:

• non-stick spray
• 1/2 cup coconut flour
• 1 cup oatmeal–quick or regular oats, plain
• 2/3 cup Stevia in the Raw sugar substitute
• 1 teaspoon baking powder
• 1 teaspoon baking soda
• 1/2 teaspoon salt
• 1/4 cup vanilla flavored protein powder (I used Optimum Nutrition's Gold Standard 100% Whey)
• 12 ounces plain nonfat greek yogurt
• 2 large eggs, lightly beaten
• 4 tablespoons unsalted butter, melted and slightly cooled (do NOT use margarine- that stuff is nasty!)
• 1 teaspoon vanilla extract
• 1 cup unsweetened original almond milk
• 1/2 cup Ghirardelli 60% Cacao Bittersweet baking chips, chopped

Directions:

1. Heat oven to 350°.
2. Coat muffin tin with cooking spray or liners.
3. Combine flour, sugar, oats, baking powder, baking soda, salt, and protein powder in a bowl.
4. Combine yogurt, eggs, butter, vanilla, and milk in a second bowl.
5. Fold yogurt mixture into dry mixture; stir to combine completely.
6. Mix in chocolate chips
7. Spoon into muffin tins.
8. Bake until top is golden and springs back when you gently touch it, about 25 minutes.

Yields approximately 10 muffins.

Pass the Butter, Please!

Lately, I've been reading a lot about food, how it affects our bodies, and just how far food companies will go to get you to buy their product.  I'm sure my co-workers are already getting tired of me ruining their lunches by sharing tidbits I've learned!  ;)  But I just have to share what I've read recently about margarine and butter.
Until about a year ago, I had been a margarine-loving girl.  It was cheaper and if I bought the "light" version, I thought I was saving so many calories!  Walker suggested we switch to butter last year because he felt margarine was basically glorified plastic.  I didn't really understand what he meant at the time but I went along with it.  About a month ago, however, I read about how margarine was made and I really started to understand his argument.  Are you ready for something disgusting?  I should warn you, if you really like using margarine, you may not want to read the next part!
So when they make margarine, they start with really cheap oils: corn, soy, canola, or cottonseed.  These oils are already full of free radicals (which are really bad for your body).  Then they mix it with tiny metal particles, usually nickel oxide.  They put this oil-metal mix into hydrogen gas in a high-temp machine.  Added to this is soap-like products and starch.  Then they clean it by steaming in order to remove the unpleasant odor.  The natural color of margarine is gray.  Gray....blech!  Of course this wouldn't tempt people to buy it so they bleach it and then add that oh-so-pleasant yellow color.  The biggest problem with margarine is that it is partially hydrogenated which means it has trans-fats!  Trans-fats, which everyone knows (thanks to Mayor Bloomberg), are terrible for you.  But so many margarines claim to be trans-fat free!  Well....here's where you need to read the label.  It says "no trans-fats per serving."  The FDA allows food companies to lower the serving size so that the serving contains less than 1 g of trans-fats; then they can say in big bold letters on the front of the package "TRANS-FATS FREE!" when really, they're not. 
I found an ingredient list of that appetizing margarine spray (actually found it in a google image search; I Can't Believe It's Not Butter's website of course does not list the ingredients).

 water, liquid soybean oil, salt, sweet cream buttermilk, xanthan gum, natural soy lecithin, polysorbate 60, lactic acid, (potassium sorbate, calcium disodium edta) used to protect quality, natural, and artificial flavors, vitamin A (palmitate), beta carotene (color).

What is polysorbate 60???  A quick google search showed that it's an emulsifier and not only is it added to cream substitutes, baked goods, and frozen desserts but also to medical treatments for acne, mouth sores, and (get ready for it) vaginal itch!  YUMM-O!! Pass me some of that polysorbate 60 please!  (in case you couldn't tell, that was sarcasm at its finest)

Ingredients for butter?  So glad you asked....

sweet cream, salt.

Yep, that's it.  Those are the ingredients in salted butter which is the kind we buy.

So I think we'll be sticking with real butter from now on and I sincerely hope you make the switch as well (if you haven't already). 

Taylor is Three!

And she has been for over a month now.  Yep, behind on blogging again. 
There is a reason why they say "terrible twos" and "thunderous threes."  I hoped and prayed that on Taylor's third birthday she would wake up and it'd be like a light switch and all of her tantrums and defiant behavior would magically disappear.  Yeah, that didn't work.  Taylor is very spirited, incredibly active, and horribly stubborn.  I only have myself to blame for the last one; I'm quite stubborn myself!  I guess the good thing is, she will not grow up to be a wishy-washy person.  In fact, I'm sure she will be quite head strong and not afraid to speak her opinion.  So, she and I butt heads quite often but I'm trying my best to use calm and firm parenting.  I do not want to resort to spanking. It's not that I think people who spank are bad parents (I DON"T); more that I don't think it would be very effective for her.  Also, she already has problems with hitting us when she's angry so I don't think spanking her would send the right message.  What I have found to be effective is taking away toys; specifically "pink Ariel."  "Pink Ariel" is the Little People Ariel figurine and she's wearing a pink dress (as opposed to the mermaid version of Ariel which we also have).  Ariel gets placed on top of our bookcase every 2-3 days.  Every time Taylor asks for her, I remind her why Ariel is up there and that Ariel will come down tomorrow.  It works.  Kinda.
So growth-wise, Taylor is in the 2nd percentile for height and the 6th percentile for weight.  No, I did not flip-flop those!  For the first time in over 2 years, Taylor's weight percentile is higher than her height percentile!  If you're curious what this means in terms of sizes, well she still wears 2T.  She could probably get away with 24 mos. bottoms depending on the brand.  On top she definitely needs a 2T for the length and some 2T shirts are starting to get too short as well.  She's just so darn skinny!  I think she only weighs 25 pounds with clothes on.  I guess that means in the last year she's only gained about 5 pounds (hmph, we should all be so lucky).
So since Taylor turned 3, she has aged out of Early Intervention services.  We were definitely sad to stop our sessions with Miss Amanda.  Technically, she now has an IEP (Individualized Education Plan for all the non-educator types out there) from Champaign Unit 4 schools.  This means that she is eligible to get speech services from them for the rest of this school year.  But that entails her going to the Pre-K center once a week for a half hour during the school day.  Well that obviously isn't going to happen given where Walker and I work and where our daycare provider is.  Unit 4 did their own speech evaluation and based on that, she has qualified for a classroom spot for next school year.  This means she will go there for half a day, every day and she would receive her speech services while she is there.  Of course I had hoped she would have gained enough from her EI services to not need any more speech therapy.  This did not happen.  Don't get me wrong; Taylor definitely made a lot of gains, but at the end of the program she was still showing a 31% delay (compared to 35% delay when she was first evaluated).  That was definitely disappointing to hear.  What's interesting about Taylor is she is on target or even above target in so many areas but then so far below target in others.  For example, 36 mos. olds are supposed to be able to count to 3 to score in the "average" range.  Well, Taylor can count to 20 (and sometimes beyond that if I get her started with "21").  But at the same time 3 year olds are supposed to have an average sentence length of 4-5 words.  Taylor's is 2.5. Taylor has an amazing vocabulary (or so I'm told; I really don't know what kind of vocabulary average 3 year olds have) but she just won't put those words together to form longer sentences.  Taylor still relies a lot on carrier phrases; "I want" still being her favorite.  A new one for her is "it's really" like "it's really hot," "it's really high," etc. 
I don't feel as guilty about her speech development as I used to.  Now I just feel kind of a sadness and longing.  It can be so hard being around her friends (who are all advanced in their language skills to begin with) and watching her struggle to even get out a 4 word sentence.  I think a lot of Taylor's hesitation with longer phrases is her articulation.  She has such a hard time pronouncing words correctly when she's trying to put them together.  If you ask her to say one word, she'll say it near perfect, but when you ask her to say that same word in a sentence, everything gets jumbled up. 
But the great thing is, Taylor only needs the IEP for speech.  The therapist from Unit 4 said there was clearly no cognitive delays.  I was so relieved to hear that.  I guess I kinda already knew it, but it was nice to hear it from someone who interacts with 3 and 4 year olds all day.  Taylor knows all of her letters (uppercase and lowercase) and now knows all of her letter sounds too.  And just the other day she started sounding out words.  Well, okay, she was not putting the sounds together to read the words, but all on her own (seriously, I did not tell her to do this!), she started pointing at letters in words (in order, not just randomly) and saying the letter sounds.  So now I'm showing her how to sound out 3 letter words.  I don't know how quickly she'll catch onto putting the sounds together to make the word, but we'll work on it.  I'll probably start doing some phonemic awareness stuff with her so that she can build a strong foundation for when she's ready to put those sounds together.
Potty Training:  uugghhhhh.  That is how I feel about this subject.  We kinda tried to do it over the summer.  It didn't go so well.  Then we tried again back in the fall.  It went pretty well at daycare (as in Taylor would actually sit on the potty for more than a minute) but at home it was a big disaster.  It got to the point where Taylor was refusing (and throwing a tantrum) to sit on the potty.  We tried reading books, bringing in the iPad, bribing her...nothing worked.  Finally I consulted with my sister (why I didn't ask her sooner, I have no idea) and she said not to push it and that Taylor would use the potty when she wanted to, not when I wanted her to.  I checked with our pediatrician and she said the same thing.  I definitely don't want Taylor to have negative associations with using the bathroom so we're not pushing her.  I do a lot of modeling with lots of excitement (you have no idea how stupid I feel applauding myself for peeing) and we have her dolls and even "pink Ariel" go on the potty (eyedropper filled with water behind their back).  We also ask her if she wants to sit on the potty or go pee in the potty.  About half the time, she'll consent to sitting on the potty but it's only for about 10 seconds.  I know there are people out there who are judging me and maybe even secretly shunning me for having a 3 year old still in diapers...well if that makes you feel better, go right ahead.  Lots of kids aren't potty trained until 3 or even 4.  I figure as long as she knows how to do it by the time she enters kindergarten, we're good (for the record Champaign Pre-K does not require them to be potty trained).  I might break down and buy a really cool toy that she can't have until she's using the potty consistently but at this point, I don't think even that would be enough motivation for her.
I'm not sure there is really anything else to share.  Hopefully I'll be able to post again soon with an update on her behavior, potty training, speech or maybe all three!